3-12/13-2001 Week One

Well, it’s been a memorable week!               March 12/13, 2001

 

Of course, the big news is that Aelfwine is in the hospital, receiving chemotherapy for Leukemia. If that seems sudden,  well, it  was.  He’d finally decided that seven weeks was too  long  to  take  to recover from the pneumonia, and got an appointment  with the  doctor  on  Friday morning on the way to  work.  The  doctor agreed,  X rayed his chest and took some blood to test.  At  noon Dr.  Quirbach  called  to  say  that  Aelfwine’s  `blood   showed Leukemia,  and  how  soon  could he get  to  Nashua  to  see  the oncologist?’ Since his work is most of the way there, he was able to get there within about an hour, and at two, was talking to Dr. Posner the oncologist from St. Josephs.

Of  course,  being  within fairly easy  range  of  the  Dana Farber, THE cancer hospital in the U.S. (or at least that’s  what they  tell us- of course, so did Lisa when she was  dealing  with them,  which  is  more believable)  they  transferred  him  there “immediately”. (This gave us our first introduction to  “Hospital Standard  Time”: waiting for about three hours for  an  ambulance that  a nurse reminded us every half hour was going to  be there “any minute, or at least within a half hour”.) They wouldn’t  let him drive himself, so Willow and I have to pick his car up  from their  parking  garage as soon as we can get to  it.  Not  during today’s ice storm…

Now  to divert, a moment, to my usual opening of the  letter with  a weather report- on Tuesday we had a wonderful storm.  The  weathermen predicted it nicely, and everyone had a chance to  get  ready-  most  of  the schools were  canceled  and  many  offices-including  Aelfwine’s. We had a MARVELOUS day playing  cards  and board  games,  playing  the piano and generally  being  lazy  and  familial.  The accumulation was, well, more than the last  storm- somewhere  between two and three feet, with lots of  drifting  to make  that measurement difficult. The geo was mostly hidden,  and the  van was nicely drifted in. Kat didn’t have school  Wednesday either, and Jon’s bus company decided not to try it, although his school  had  a simple two hour delay. So we all dug  like  crazy,(except  Aelfwine, who was winded after a couple  of  shovelsful) and got Star to school and Aelfwine off to work. Friday  there was a second storm coming in, so when  he  was transferred  to Boston, rather than have Aelfwine worry about  me driving  in  it, I went home- leaving him still waiting  for  his ride,  and didn’t follow him down and watch him get  checked  in.

The  Friday night snow was only about a foot, so while it was  no fun to drive in (even just back to Lyndeboro) it only took  about an hour to dig out of the next morning. Willow  had a workshop for the Renn fair. Luckily,  Michelle and  she were car pooling, so that wasn’t interrupted. She had  a great  time, she said that she hadn’t laughed so much  in  weeks.  This  weekend they were working on character  development.  (They STILL  want her to wear a pot on her belt so that people will  be able to tell she’s a cook. This argument will probably go on  for weeks.)

Also  on  the weather, I understand that it’s the  best  ski season  in  30  years, and I note with  some  irony  that  having decided  NOT  to do maple syruping this year, this is  the  first year  I can remember when we’ve had a good long stretch  of  days above 40, nights below freezing and snow on the ground. I console myself that it should make the syrup more affordable when we  buy it.

Back  to  the  tale of Aelfwine. While  I  was  digging  out Saturday  morning,  he  was  getting  his  first  run  of  tests. Apparently  since Leukemia is a cancer of the blood, one  doesn’t have  to biopsy as much, since all you need is to look  at  blood which  is  fairly easy to get at, and you can  see  the  abnormal cells.  His  initial  “crisis” problem was that  because  of  the Leukemia  he  had become anemic. His Red Blood  Count,  which  is supposed to be around 40, was down to 15. So the first thing they  did- “right away” (the wee hours of Saturday), was started giving him  whole  blood.  After  four units of blood,  he’s  up  to  an hematocrit  of  26, and they started giving  him  platelets  (the component of blood that helps with clotting). That seems to  have started  a  hive  reaction, but not so  severe  that  they  can’t control  it  with Benedryl. So his blood is looking  better  now- except  for  the  white cells, which is the  one’s  the  Leukemia attacks  directly. Anyway, they did get around to taking  a  bone marrow sample over the weekend- from his hip, and yes, it hurts.

Everyone there is terribly impressed with how healthy he is- for a guy with leukemia. No smoking, no drinking, healthy  eating and  exercise, he’s young (the average age is 65). Not only  that they  checked  and  his particular cancer cells  have  a  certain protein that allows them to use a special drug that targets  that protein and presumably makes the chemotherapy more effective at attacking cancer cells rather than the rest of his body. I’d  always wondered why people’s hair falls out  when  they have  chemotherapy.  Apparently the drugs they use  target  cells that reproduce a lot- like cancer cells. But certain other  cells in  your  body  do  that too- like  your  hair  follicles  (also, presumably,  your  nail beds), and some in your  digestive  tract especially  those in your mouth. They say he can have a wig-  and guys  with  beards  even  can get  false  beards-  they  seem  to understand  the importance of self image. But they also say  that face  and body hair is more likely to thin than fall out,  so  he may not need it. That’s good, because while a bald head would  be weird,  the kids all agree that they aren’t really ready  to  see his chin.

Anyway,  according to Aelfwine’s doctors while the bad news is  that Leukemia is fast moving, but the good news is that  it’s curable.  They actually use the word cure. A lot. They say can completely get it, and he will be totally recovered. (Of  course, they could be lying to us- they seem to have a very flexible idea of what constitutes what people should be told. As it changes so often I am really getting the impression that they are masters of telling  you  whatever  they  have  learned  will  get  the  most cooperation  out  of patients and their families for what they think  is  best  for them. I don’t doubt their  motives  at  all, except  that  I  don’t think they  respect  our  intelligence  or ability  to cope much, and so are manipulative out of habit and training.  This, of course, leaves the burden of research on  us.

They did pass us a pile of little pamphlets-  there’s  something less  than  satisfying  about What everyone  should know about Leukemia written in 1980. On to the internet! (where, of  course, one can believe about 10% at best and the game is figuring  out what 10%). The figures I’ve seen so far say that at  this  point they’ve  got an 80% total remission rate. Of course the same  set of figures also claim a 40% five year survival rate. Now what  is THAT  difference  all about? They eliminated the cancer  but the other half of  those who died died of  complications from the chemo?  Several people have sent us directions to web sites to check out. Maybe I’ll get to them tuesday, (today) as there’s  an ice storm and I assured Aelfwine that I wouldn’t drive in it.

His  diagnosis is Acute Myloblastic Leukemia- if I wrote it down  correctly.  (I take a lot of notes,  but of course, the doctors don’t check them.) That’s not in the list of options in the pamphlets, but could be a mistranscription, or it could be a specific  sub variety or an alternate name that this doctor uses for one of the usual varieties. I’ll let you know.

The  drugs  they’ll  be using  are  Ara-C  (Cytarabine) and Cerubidine  (Daunorubicin) which they gave us  fliers describing (so  I’m confident on my spelling of those). Those are the  basic anti leukemia  drugs which they have confidence in after using them for 30 years. The fact that they have so much experience with this makes the engineer in AElfwine very  comfortable.  It appeals  to the engineer in me too, but my engineer is warring with  my alternative medicine practitioner- so I’m not quite as sanguine  about  it as Aelfwine is. Of course confidence  is  far more  important  in this case than mine. He’ll  also  be  getting Cephtrasadine  which  is for when he gets  neutropinic,  (rat!  I forgot  to  put down the definition of that! Only that  it  means that some reading has gone under 500. update, next week) and  the new  drug Myletar, (which is the one they are so  excited  about) which is the one that targets the specific protein CD33 which  he has on the surface of his Leukemia cells.

Dr.DeAngeloHis  doctors  are Dr. Daniel DeAngelo, who’s his attending physician, and Dr. John Hamarch, who’s his fellow. The  attending is  the experienced physician who oversees the residents  who do the  bulk of the work at the hospital. The fellow is the doctor who will follow his progress during his whole stay, no matter how long  it  is.  Apparently every month  the  attending  physicians rotate, and it just happened that Dr. DeAngelo is THE  specialist in  Leukemia- out of all the oncologist at the Farber. So for a month,  he’s  got  THE  specialist  associated  with  THE  cancer hospital  in the world. As they told me, people are shipped  here for treatment from all over the country and even the world.  Arab sheiks  come to this ward with their cooks and  their  bodyguards that  stand outside their doors. Of course, I suppose that  means that  in  other  months his attending  physician could  be an obstetrician.  But that’s weeks away. (which is pretty much how I’m dealing with everything right now- one day at a time.)

We  are told that the room where he is will be  his  “world” for the next couple of months. Of course, when we first got there they said 2-3 weeks, and that grew to 4-6 weeks, and finally this morning,  the social worker told us that we might as  well apply for Social Security Disability even though it doesn’t  kick  in until  you’ve  been  on disability for five  months,  because  on average he can expect to not get back to work for eight! (Boy, is Granite  going to be in trouble! Of course, the doctor said  that he’d be able to telecommute for part of that time- we’ll have  to see  how that effects the Disability- obviously  we  don’t  know enough about that yet.) Still, they figure he’ll be in there  for a  couple of months, so he can make himself  “comfortable”:  tape cards to the walls, stuff like that. He CAN’T have any flowers or live plants though- (I suppose he could have them if they  boiled them first) any that are sent to him will simply be left in  the lobby  for  the  staff to enjoy. (I figured that at least they should send them home with me, but apparently that’s not the  way they do things.) So we are telling anyone who wants to give him a gift  to think about donating blood in his name. If you want to write him, his address is:

6C Room 60

Brigham and Women’s Hospital

75 Francis St.

Boston, MA 02115

and his phone # is 617-732-4169 it goes right to him. Call  here if you just want a progress report- and this letter will still be written  every  Monday as usual. I can add people to  the  e-mail list for it, if you know anyone else who’ll want weekly updates. I’ll be on the road a lot, so remember, my cell phone is 603-554-6415. Try  not  to call him between 7 a.m. and 10 p.m. (unless  he asks  you  to).   He’s setting up e-mail now at  aelfwined@hotmail.com, so that should start working sometime next week. (so far he hasn’t “wined”)

Now that he’s on Chemo, he’ll be tired a lot, so if you  are going  to visit, even if you arrange it a week in  advance,  it’s probably  a good idea to call just before you leave to make  sure he’s going to be up for a visit. Also, no visitors who have  been exposed  to colds, flus or anything contagious. Wash  your  hands before you hug him, and that sort of thing. Remember, until  he’s rebuilt  his  health, he’s got no immune system. Also, turn off your cell phones when you come into the hospital because it could effect some of their medical equipment.

(As  a  personal note, let me add that he  really does have enough stuffed bunnies.)

Charlotte  (Tracy  and Jan’s daughter) sent him his first paper  crane  (it’s a japanese tradition to send  a  person  with leukemia 1000 origami cranes) and I hope he’ll that many. I think our  SCA  friends  are going to send him  pictures  of  the  SCA.

Kerensa has offered to help butcher the extra goats, and Ken and Minna are going to take care of the rabbits that I’d offered her for  her  tanning  workshop, butchering  them  and  wrapping  and freezing  them for us. Vicki contacted the Heifer Project to  see if  they can place any of our extra does. (It would really  be  a pity to eat a potentially good milker.) We’ve hit Tamooj up  with trying to round up folks to put up our house  at  Pennsic  this year.  (Of course, there’s no guarantee we’ll be able to go,  but we  might as well prepare for the difficulties we’ll have  if  we do.)  Olaf  and Val and several others have  volunteered  to  get tested  for bone marrow matching if it should come  up.  Everyone has been very supportive.

Actually,  it  probably won’t come up. First, if  the  chemo works  as  well  as  they hope,  the  remaining  bone  marrow  in Aelfwine’s bones should regenerate, with no transplant needed. If that  doesn’t work, then they look to his siblings- which,  since he  has three, they figure should generate a match.  Outside  the sibling group the chances of a match are one in ten thousand, but since that’s not even going to be an issue until the first  round of chemo is checked to see if it works. Of course, if you want to join the general donor pool and are willing to save the life of a stranger, not just AElfwine, please do.

He’s  been really bummed to find that he will never be  able to give blood again, he’s donated at least 6 gallons already, and hoped to be able to donate that much again before he died, so if anyone wants to give him a present he REALLY would like, donating blood  would be good. If we could show him that the  blood  banks are up 6 gallons because of him, he’d feel a bit  better about what he won’t be able to give personally anymore.

The chemical “cocktail” goes into his body through a Hickman Catheter-  which is installed “permanently” (for the duration  of  the  therapy)  in one of his major blood vessels  in  his  chest. Since the drugs are so corrosive, they have to put it into a  big one,  rather  than the smaller vessels they can use  for  saline, glucose, etc. He started running a temperature over the  weekend, so they started the first treatment through a vessel in his neck- apparently they wanted to get started, but don’t want to risk  an infection in the Hickman.

Leukemia  patients  in this acute stage  basically  have  NO functional  immune  system,  so  the main reason  he  has  to  be hospitalized is to run interference (through sanitation as far as possible,  and  antibiotics  when that  fails)  against  all  the possible infectious agents to which he could be exposed. The reason he’s in Brigham and Woman’s is because they  have  some  sort  of partnership with the Dana  Farber  Cancer  Center.

Despite  having  to deal with ANY hospital bringing  my “control issues” into sharp focus, the Farber is really very advanced in dealing with patients supportivly. For example, they have a whole complementary therapy unit- with people who do Reiki, hypnotherapy,   guided  imagery,  a  lot  of  the   “alternative” therapies- but practiced in conjunction with the latest  standard medical procedures. The doctors are cool with his taking Essiac during the chemo to  help  with the side effects (I did NOT mention  the  possible cancer  fighting  properties), and they had  had  other  patients who’d  used  it. I did point out that I was making it  in strict compliance  with sterile procedures- after all, it was  developed for  cancer  patients- with compromised immune systems.  So  he’s started  taking  it three times a day. Until he’s done  with  the chemo  though,  he can’t take vitamin C or  other  anti-oxidants, they’ve  learned  that  those interfere  with  the  chemotherapy, although they are good for rebuilding the health afterward.  (can you say “even more complicated”, boys and girls?). That’s why  I’m taking notes.

I  think that covers what’s happened the first  three  days. (It’s been a long week!) E-mail or call if you have questions and I’ll try to answer them.

Other  than  that, because of the snowstorms,  it’s  been  a quiet week. As usual, Star really resents missing days of school, and  grumps  about it a lot. But he’s shoveled without  too  much complaint, and has been wonderful about helping with the  chores.He hasn’t been down to see his father yet, but is looking forward to the video phones that the social worker says the Farber has to loan to patients with children while they are in the hospital. So is  his  father  actually. Techno-junkies. He  doesn’t  seem  too disturbed  about  his  father’s  illness, but  he  does tend to internalize things that bother him, so we will have to watch  and  be  open  to anything he wants to let out about  it.  Frankly,  I wouldn’t want him to worry too much, as the prognosis is good.

Kat  is more open about being upset- she went down with me Saturday and drew him some pictures on his white boards. I  sent notes to school with the kids to let their teachers know what had happened and in the first class, someone mentioned what they’d done over the weekend with their father, and she dissolved into tears.  At that point she just pulled out the note, and all was explained. The guidance councilor got her some origami paper, and after  she folded a few cranes she went back to class, feeling  a bit better. Frankly, that’s about what I’d expect- fine, most  of  the  time,  with  occasional tear storms that catch  you  at  odd moments when you least expect it.

Other  than that, her dance performance was canceled due  to the  snow  storms  eliminating  their rehearsals.  It will be rescheduled.  On the other hand, while we were shoveling she was on top of the pile by the driveway because it had gotten too high for us to throw snow past the top- so she was stationed up  there pushing the top off the back. Since then, she has tunneled a cave into the side and through the top of the big berm and is working on  an  offshoot  for Star. I remember when my  brother  and  his friends  used  to make those snow caves. Mothers  always  worried about them collapsing. Now that I’m a mother, I worry. Part of me is like the kid, excited about the cool thing she’s making,  and part of me is watching the weather and wondering how long  before it melts  to structural instability. So she doesn’t work on it when I’m not here, and answers IMMEDIATELY if I call. And it’s  a cool project.

Dan has started working for a temp agency, and is  bringing Brad  up  here  on Saint Patricks Day to prove to  him  that  her mother  really  IS crazy and DOES put green food coloring in the corned beef on Saint Patricks Day. Well, that’s the way MY mother fixed it! It’s only once a year. I think she’s visiting Aelfwine on Tuesday.

People  ask me how I’m doing- and I fear my answer  is  much like  the  ones we get from the hospital- it  depends on what’s going on from minute to minute. Sometimes I’m just fine- at other times I am a basket case. You should have seen me (or not!) when first  got  to  the hospital  Saturday.  They give excellent directions on  their  voice-mail (if  too  rapidly).  What they neglect  to mention is that while there is plenty of  parking  in the  hospital area- there are only two parking garages that  will take vans of 6’6″, (none over that) and those only have about  12 spots  total!  After about an hour of driving around  and  around checking out big blue P sign after P sign with no luck, I was crying  hysterically. Finally I risked one of the 6’6″ places  (I thought  we were 6’8″) and the nice attendant allowed me to park in one of the empty “Reserved for Van Pools, others will be towed at  owners expense” spots. I felt like it was some sort of  sick, twisted  joke to play on people who already have enough to worry about.  (And it turned out I didn’t have my Rescue Remedy in my purse  either!)  When I calmed down, I decided to try to rent a smaller car for the month. Willow and I gave using the T a  shot, but  it  took an hour and a half ride and made it into a 3 hour ride.  Oh, well. Still, her suggestion to take Rte. 2 is more efficient  than  coming down 93, as I’d been doing. At first I thought it was going to be two hours each way.

Dear  Steve tried to visit Aelfwine, and even got as far as the  lobby before the old memories of when Lisa was there overwhelmed him. I think that he’s going to be my biggest support during this time, as I know whatever I’m going through, he’s been through the same and worse. I really miss both Lisa and Mom right now,  and of course, remembering people we’ve lost to  cancer is inescapable.

Did I mention that last week I picked up a set of tuned wind chimes?  As  it’s still very snowy, they’ve been hanging  in  the kitchen, and ring every time someone brushes past them. I find it very soothing.

Intellectually,  I  still  feel  that  there  is  something seriously wrong that no therapy is considered acceptable if  it hasn’t been  tested, but the organizations who test protocols won’t bother testing any therapy unless they can make back the money that the  esting will cost by selling the product afterwards.  Because of this, no safe, easily available therapies are being tested, at least not in America. Still, we, personally, aren’t  having an intellectual exercise on the greater good,  we are dealing with a serious  problem that must be solved immediately.  I have  o admit that due to this political situation,  while I would really prefer a less dangerous therapy, at this point there isn’t one available (that I know of, and they certainly aren’t suggesting any). So we use the tools we have available when the job needs doing, even if we suspect that there are better ones elsewhere. (And I’m sure there are  those  who’d argue with me on that, but for now, don’t bother- while I usually enjoy  a  debate, right now I don’t have the time,  and besides, it’s not theoretical now.) I am very well pleased with the  human aspect  of  the hospital, it appears to be much better than the (admittedly few) other hospitals I’ve seen. I am exceptionally happy that we just lucked into about the best care available in the modern world being nearby- right time, right place, even right attending.  I was thrilled that they have a whole complementary medicine team available- we’ll be able to have a RN who practices Reiki come work on him. And I am SO glad the social worker is  helping us with the parking  situation.  I’m also relieved that, so far at least, it looks like our finances will get by.  And I am so touched at the outpouring of  support  that we’ve been getting in the last few days.  But not surprised.

Other than that, I am finding solace, as I expect many other people  going  through  this type of thing do,  in  doing  simple household  chores between  trips to the hospital.  I  get great soothing from washing a load of dishes, sweeping or cooking.  The twice daily barn chores are especially therapeutic- milking  the goats, getting the rabbits ready for kindling, feeding the geese, looking at the peacocks… I leave the barn feeling renewed  each time. As I’ve always maintained- people shouldn’t have this  kind of  life if it’s not what they want. I’m not sure I’ll  get  much soothing from the project of getting the place clean enough for a weakened immune system during the next month. But Willow’s friend Jenny is coming for a couple weeks to help us- which is going  to be  great.  Really,  I am more worried about Willow than about Aelfwine and myself. She’s trying to keep the house running  and the kids on schedule while I’m running  around doing hospital visits, calling Social Security, etc. etc. And let’s face it, besides having CFIDS,  she’s doing the PCA  job,  the weekend workshops, and working on her art/writing career. I cannot think of a way to show her how much we appreciate her, and how much she does for us.

I realize that this has been pretty much a one topic letter, but  I  figure that it’s pretty much what  people  are  wondering about,  and  I’ve tried to answer all the questions  most people have been asking. Actually, having this letter in place makes  it much  more efficient  for me to get the  news out to  everyone without having to answer each question multiple times  to different friends,  so if you know anyone who’s  going to want weekly updates on Aelfwine, let them know and if they  send  me their e-mail address, I’ll add them to the list.

Honour says Alex is doing very well in school lately.  Wolf had pneumonia last week. Megan finished (preparing) her book, and is now working on the printing part of it. I spent most of  last week working on a new booklet for introducing new members to  the SCA  as the barony doesn’t have one- I was going to offer  it  at the  Barony Meeting on Saturday, but I’ve been diverted. I  guess that  won’t  get  printed up until this current situation has passed.  (I hesitate to call anything that is going to  last  for between 2-8 months a “crisis”.)

Please  be assured that we intend to take full advantage of all the wonderful offers of help that are being tendered.  And especially, keep praying.  I, truthfully, have more faith in prayer than in chemicals. Thank you.

Tchipakkan

“Health nuts are going to feel stupid someday, lying in hospitals dying of nothing.”  – Redd Foxx

PS When I finally got up to the Cancer floor after the misery and hysteria of trying to find parking, when I came into Ælfwine’s room he seemed to be asleep, but he opened his eyes and said “Hot Dang” when he saw me. I don’t know anyone else who’d honestly use that expression, and it meant the world to me. Also, he complained that the milk they have in the hospital tasted “cowey”, the counterpart of all the people who say our milk tastes “goaty”.

 

 

 

 

 

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